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Autoimmune Diseases and Fatigue
Fatigue is probably intertwined with the definition of "illness", almost any illness, but with some conditions fatigue becomes ingrained into the afflicted person's being and is a feature of their daily life. Such is the case with the highest profile disorders, cancer and cardiovascular disease, but it is just as true with at least some autoimmune diseases. I have a long history of dealing with autoimmunity and the complaint that kept bringing me back to doctors persisting in finding out what was going on was the dogged lack of energy, vitality. I got guess after guess after guess and when I got the "answer" it was basically that fatigue was part of the deal with the autoimmune disease that I have, Sjogren's, as well as I'm sure many others. So what I'm asking here is if you experience it, fatigue, how has it impacted your life and how do you deal with it? Have you found anything that you are sure mitigates it?
In my case its exercise, rest, and a fairly regulary low dose, around 50 mgs (usual recommended dose 200 mg) of modafinil, which I don't take for Sjogren's but rather for "Excessive Daytime Sleepiness" linked to Obstructive Sleep Apnea. I accidentally found out that it mitigated my general weariness. I've read some solid studies that found that American Ginseng can help cancer-related fatigue but apparently it doesn't work for Sjogren's, for me at least. Since fatigue impacts a person's total life experience in all domains, any information that might lead to dampening or controlling it would be very helpful to a lot of folks I'm sure.
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@jmmb I can't imagine to know the pain and suffering you are going through. All I can do is tell you to try and stay strong, keep asking questions and pushing for answers. There is an answer out there for you somewhere. No one knows how you feel except you and that makes you your best advocate. I'm no medical expert and have no medical training but I rely on learning as much as I can about my diagnosis, current treatments, research being done for the health problem I have, and trying to connect with others with similar health problems.
I did a little research and found an article on MALS that may provide a little more information for you. It is research article by several Mayo Clinic doctors.
Median Arcuate Ligament Syndrome: A Nonvascular, Vascular Diagnosis:
-- http://journals.sagepub.com/doi/10.1177/1538574411406453
Hoping you find some answers and a treatment that helps.
John
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2 ReactionsJohn bishop, I wish I could find the answer to fatigue. I have RA and a heart condition. I am sure my fatigue is encouraged by heart meds
But, I am unable to even stand for about 4 hrs after I get up. I also take a nap mid day. Maybe some of mine has been how my RA has kept me from enjoying my retirement yrs. We worked so hard all of us, got our pay and never asked anyone for help. I M moving thru my life and it seems my tiredness is on schedule every morning and underlying at all times.
I feel like I don't get enough sleep. I can sleep sitting down. I have separate from my family. Not their choice, but I am to tired to go anywhere. I may have to have some kind person adopt my 2 Yorkies 2 yrs old.
I'm so sorry to hear the pain your in .I can't imagine either hopefully the article John sent you will give you some new info If you like I will put you on my prayer list I have prayer partners all over.We just prayer for a girl who was dying now she's eating solid food and walking With many God is in the middle Turn your eyes upon Jesus.Let me know .Love @light Linda
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2 ReactionsThank you John. I have been trying so hard to be my own advocate. I have collected research, facts, talked with other patients with same symptoms and frustrations, yet I can't get anywhere. I keep getting shot down. That is why I was so crushed with Mayo. I felt that was my last hope. However on some other MALS only groups there are other places I can send my info to for consult, however, they are in other states, and long wait time because there are so few that know and understand MALS since it is so rare, but you do what you have to. I have recently got in touch with my original surgeon who preformed my first open and actually published an article on my case since it was so rare. He is in Texas, I am in Az, so that is not to far. I will be sending my latest films and go from there. There are just so many GI symptoms that come from this I really need a good GI dr. as well. The article you sent was very good, thank you. Unfortunately there are quite a few like that, I have them, and yet I still hear, ganglion has nothing to do with it, or you have sufficient flow, you shouldn't have those symptoms and get pushed aside, like its in my head or something. My fear is that as time goes on, it is causing more damage to my insides as I have seen with others. Many have gotten pancreiatis,don't know spelling, POTS, EDS, and I don't need that. I already have chronic fatigue syndrome. I was managing that well after a few years of pure hell. The surgery and all of this brought it out. It is just so frustrating when I feel I have all this, why wont someone listen!!
So thank you for listening.
Jill
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2 ReactionsSo true lioness..
Thank you that is so kind of you.
Well look at it this way You,he got a company hahaI know it's hard to laugh at hurting but laughing is a good pressure release.Also Tapping even to silly things Take care Lioness
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1 ReactionDo you take Magnesium @Calcium together? I take them every night before bed call asleep without any trouble
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1 ReactionJust got some info on a pain protocol it's through a website ,,www.21DayPainFix.com It will be on 3-15@ 1 pm ESt You have to sign up for it